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National Nephrotic Syndrome Patient Day Annual Report 2017

Carlie Higton and her father providing a personal perspective to coping with Nephrotic Syndrome.

Dr Wen Ding’s interactive explanation on how healthy podocytes differ to podocytes in patients with Nephrotic Syndrome.

Sandra Currie, Chief Executive of Kidney Research UK giving her talk called “Research Matters”.

4 May 2017

Bristol Renal were delighted to be able to host the 3rd annual National Nephrotic Syndrome Patient Day at the Dorothy Hodgkin Building, School of Clinical Sciences on Wednesday, March 29th 2017.

The purpose of the event was to share information with patients and their families on the current understanding of the causes of Nephrotic Syndrome and to showcase the research being undertaken into this devastating disease in Bristol. The day was sponsored by Kidney Research UK, the Nephrotic Syndrome Trust and the British Kidney Patient Association.  As well as tours of the laboratories the patients and their families enjoyed talks from members of Bristol Renal and keynote lectures from Sandra Currie, Chief Executive of Kidney Research UK, Kate Creswell, Regional Advocacy Officer of the British Kidney Patient Association, and Carlie Higton  who gave a very personal, emotional and uplifting patient’s perspective to coping with the disease. The Organising Committee Professor Moin Saleem, Dr Gavin Welsh, Dr Maryam Afzal, Dr Liz Colby and Mrs Wendy Cook from the Nephrotic Syndrome Trust (NeST) would like to thank all who made the day such as success.

Response from patients and their families was inspiring with such comments as:

Just to say thank you so much for all you did once again to make Wednesday such a success. Richard and I really enjoyed the day and are still learning, even after my having the condition for 48 years! It was good to meet so many interesting people and we found looking round the research laboratories very enlightening. What an amazing array of speakers too who were all so interesting to listen to.”

Thank you so much for a great day on Wednesday. Lucie and I both really enjoyed it. Lucie told me that she really liked to be somewhere where people "just understood". (Lucie is ten years old and travelled with her family from France for the day).

Further information

Link to talks:  https://www.youtube.com/playlist?list=PLPYXF9-1-FzDJx6dLNP9_AHsUv9pyj1Jv

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